Hey everyone, Just asking for some support.

[Gribur]

Hi there, My name is Larry and I am from Ontario Canada. I was born with Aortic Stenosis and have been monitored since the age of 8 months. I just had a yearly appointment and the news I have been dreading all my life was given to me and I will be requiring surgery. I have been lurking here waiting for permission to post and you are all great and knowledgeable. I am hoping I can give you a few of the numbers I was given and that you may be able to help me out a bit in understanding all of this. Since the cardiologist told me about the impending surgery I have been paralyzed with fear of doing anything. I have a beautiful soon to be wife (getting married on Sunday) and 3 amazing children 4,5 and 6. Everyday has been awful since the appt. I have cried, been scared, anxiety and sometimes calm, I feel like it is eating me alive and I cannot go on like this.
Here are some numbers and maybe you can help me by letting me know from your knowledge how bad this really is and what you think. I asked if I was going to drop dead and the doctor said "I don't have a crystal ball" and said to slow down., leaving a lot of room for an active imagination to go to work. I feel like sitting on the couch all day and doing nothing to raise my pulse or stress me in any way. I am definately depressed. I am normally active and upbeat but I feel as though the life has been sucked out of me.


Diagnosis June 2011:
Bicuspid aortic valve
Aortic stenosis
peak grade of 76 mmHg and a mean gradient of 45 mmHg with an
aortic valve area of 0.07 cm2 consistent with significant aortic stenosis. There was also a mild to moderate
degree of aortic valve insufficiency. He also has a dilated ascending aorta at 39 mm.


Recent Visit leading to conclusion of surgery April 2012:

There is normal sinus rhythm. His echocardiogram today shows
a dilated ascending aorta, a bicuspid aortic valve with critical aortic stenosis with a peak gradient of 141
mmHg, mean gradient of 76 mmHg, and a valve area of 0.7 cm2. There was concentric left ventricular
hypertrophy with preserved left ventricular systolic function.

On examination, his oxygen saturation is 97%. The right upper extremity blood
pressure is 110/70. The left upper extremity blood pressure is 95/60. The lower extremity systolic blood
pressure is 120 mmHg by palpitation

Sorry this is so long and if anyone would like any more info to help figure my situation out please ask. I know the best person to ask is my cardiologist but I am feeling that hey you have all been there or are there and although you may not be doctors you may help ease my fears or let me know if they are warrented. I have tons of stuff to ask and tell but I am hoping to have these issues gone over before anything else. Please help me out, thank you and best wishes
Larry

 

[Duffey]

Hi Larry!
Congrats on your upcoming wedding!
The numbers you've posted indicate that you're ready for replacement. Your pressure gradient, aortic valve area and hypertrophy of the left ventricle confirm that the stenosis has worsened to the point that the valve needs replacement.
You will be fine, even though you might have a bumpy ride over the course of the next few months. In the long run, though, you'll be better than ever.
Do you have an appointment to meet a surgeon?

 

[clfhangr]

Gribur,
Well lets concentrate on the good things. Blood pressure is good would not cause undo stress on the dilated ascending aorta.
I am going to assume that you have no symptoms since you did not list any. That in itself is a good thing and means you have good baseline at this point to ready yourself for surgery, which may be a ways down the road.
The key to dealing with a medical condition is to be informed. Its sounds like you need to translate your fears in to a list of questions for your cardiologist and get some solid answers to put your imagination to rest.
I was diagnosed in June of 2007 with severe regurgitation of the arotic valve and congestive heart failure. I had surgery 2 days later and did great even in the compromised state that I was in at the time. I fully recovered to do everything that I did in the past and have been going strong ever since. I do need to have an aneurysm fixed now but I was able to take the elective route with my surgeon this time and do it while I am healthy and strong.

There is a wealth of information on this site and the one thing that I know is knowledge is power when it comes to our health conditions. I am sure you will get more than a fair share of responses to your post and they will empower you to forge ahead and gain that knowledge that you need.

From what you said it sounds like you have done what everyone has done at some point dealing with aortic disease. You are only human and you need to remember we are all here to help.

God bless
Keith

 

[Gribur]

I have had some mild symptoms, short of breath sometimes and slight tightness in chest and occasionally lightheaded/dizzy. I am not sure to what degree anxiety plays in this. I also keep coming across the term SUDDEN DEATH, this is a major worry, any idea what causes this in most cases? wow, I am a mess right now! I also wanted to let everyone know that I am 37 Years old.

 

[clfhangr]

Gribur,
I would say get your list of unknows and head to your cardiologist and start working on setting up an appointment with a surgeion. Get a game plan going so you know what is going to happen with your treatment and then take it one day at a time.
Like I say the not knowing is the tough part. I have 4 kids and my first aortic surgery was at age 40. I am going back in for an anuerysm repair, and total root replacement in a week on May 7th. My doctors and I have developed a plan to treat this and that is half the battle. If you need someone to talk to I am all ears. We can set something up and get together. Talking about it always helps.

Keith

 

[Bryan B]

Gribur,

I just posted on your thread at the Heart Talk forum. In your case SUDDEN DEATH could occur if your stenotic valve completely closed up or if your ascending aorta dissected (ruptured). Based on the information you gave it sounds like neither of these scenarios are likely to happen in the short term. That's why your cardiologist is suggesting to have the surgery now, before you reach the point where these scenarios become more of a possibility. Most surgeons prefer to do surgery on patients while their symptoms are mild instead of waiting until the last minute when the situation has become critial. Your odds of having a successful surgery and recovery without complications are much better now than if you wait until things get really bad.

Keep asking questions and we are here to help you along the way.

 

[Bill B]

There's not much to figure out here. You need surgery. Your "numbers" are like mine were, getting into the severe territory, and I had essentially no symptoms. With your tiny valve area and high pressure gradients (same as mine), bad things are not far enough away that you can put this off very long. Although being anxious and worried and upset is extremely common, if you focused on the fact that the surgery you are about to undergo is ROUTINE AND OVERWHELMINGLY SUCCESSFUL, you might be comforted by seeing that you have very little to worry about. The main thing is to find a surgeon you trust, and put yourself in his/here very skilled hands. The surgery is over in a flash and then you spend several months regaining your strength. After that, you will have a NORMAL life expectancy. Without the surgery you would be doomed to a very early death. So, thank your lucky stars this can be fixed and fixed so well that your life will be without restrictions once you complete the recovery. Make sure your family is aware of how successful this surgery is so they don't spend too much time in unnecessary worry. Ask your surgeon what his success rate is for this surgery in people like you, and you will see what I mean. Do not dread this surgery. It is lifesaving and will allow you to fully enjoy your kids and new wife. I am 2.5 years post-op and can do anything I want. I'm extremely active, riding motorcycles and racing cars at very high speed, and have all the energy of people half my 65 years.

 

[Gribur]

well it feels good to have others with knowledge. I think I can almost handle the thought of having the surgery, i imagine the upcoming tests and what not will prepare me some more. I am just scared to hell of surviving until the surgery, I think that is what may have me so up tight.

 

[Jkm7]

This is such an amazingly successful surgery that it is hard for us to imagine to the surgeons and their teams, it is 'another day at the office' for almost all the surgeries. Given an otherwise healthy patient, particularly a young one in any kind of 'decent shape' and the likelihood for totally successful outcome is huge.

For us, it can seem overwhelming but hopefully you will find as the time for your surgery nears, you could well find the peace many of us do and we give ourselves over to the professionals to do what needs to be done.

I was fortunate that my wait from when I learned I needed a second surgery (two in four years), I only waited one month. Even that was difficult but many of us agree the wait is the hardest part of the whole thing.

The sooner you can see a surgeon and get it scheduled, the sooner you can get on with recovering and going on with a long, fully, active life.

Some folks here have asked their doctors for anti-anxiety medications to help them along and there's nothing wrong with seeking chemical help in this situation. Most doctors readily prescribe 'as needed' meds to help you over the rough spots.

There is no reason you should not expect a full recovery to enjoy life with your new wife and your children.

 

[Bina]

Hey Larry, greetings from Ontario !!
One step at a time: Focus on your upcoming wedding, keep a couple of Ativan pills in your pocket, and then book an appointment
to see a surgeon at a good heart surgery hospital. Will you be going to Ottawa or Toronto?

Mine was done a few years ago (age 46) in Montreal. I was also convinced that I would die, but these heart surgeries really
have become quite common and patients don't just go "poof". The cardiac teams have so much experience with people like us,
and the techniques are evolving as we speak.
Don't be shy to ask anything on this forum, most of us have "been there-done that".

 

[camgough]

Hey Larry, you will be fine. I had my surgery almost two years ago at age 30. I had no symptoms but my aneurysm was very big and needed to be fixed. My surgery was in Ottawa. If you have any questions let new know.

Cam

 

[ElectLive]

I am just scared to hell of surviving until the surgery, I think that is what may have me so up tight.

Larry - The crystal ball comment from your doctor truly was in poor taste. I will echo Bryan B, if your situation was truly "drop dead" serious, you would have been sent directly to the OR. That being said, your situation is still serious, you do have a bicuspid valve in need of replacement, and delay is not in your best interest. It's not fair, the timing is awful, but you will adapt, you will overcome. I was diagnosed at birth, so also spent my whole life with the possibility of valve replacement in the back (way back) part of my mind. Yet, when I turned 35, my wife in her third trimester expecting our second child, the usual boring "see you next year" echo turned up an aortic aneurysm that came out of nowhere and stunned me. So, it was instead "see you in 4 weeks" - but not in the office, in the OR. Well, very long story short, I had so much fun that day, you know what, I decided to return 8 weeks later, but that time, to see baby girl #2 being born instead.

Please have yourself a wonderful wedding, and I promise you, this news doesn't have to ruin everything. You just have something important to take care of, and everything else will work itself out. Sure, it's not easy. I know the feeling, and so many other here do as well. In my version, I agreed to leave my pregnant wife and 2 1/2 year old girl in a waiting room while a surgeon temporarily stopped my heart. It was easy to imagine the worst. But I put that all aside and focused instead on what needed to be done and getting ready for it in every way I could. Then, I walked confidently into surgery with a smile on my face. This will no doubt be quite a year to remember for you. It was for me too, and it was the best year of my life (http://www.valvereplacement.org/forums/showthread.php?38916-The-Best-Year-of-my-Life).

 

[bocco]

Larry, hit your doc up for something to help with anxiety. Ativan like Bina mentioned. I did before my surgery and they helped. They also helped my wife while I was in surgery.

Like Bill said, they do this all the time now. And recovery is great when you are young and in good shape. It's OK to be be scared. But when your on the other side it won't seem so bad.

So make an appointment for after your honeymoon. Enjoy the wedding and the honeymoon. Then just git r done.

Good luck.

Gary

P.S. Make sure your wife has the login to this site so she can keep us posted on your progress.

 

[Bill B]

well it feels good to have others with knowledge. I think I can almost handle the thought of having the surgery, i imagine the upcoming tests and what not will prepare me some more. I am just scared to hell of surviving until the surgery, I think that is what may have me so up tight.

I don't think your condiiton is so bad you should be so terribly worried about sudden death. If you were truly at any significant risk of that, I'm sure your cardiologist would make arrangements for you to have surgery in the next few days. I was almost exactly in your condition and dealt with one of the most reknowned cardiac surgeons in the US. He gave me a 5 month deadline to complete the surgery. I had it done in 3.

 

[Sarah_Louise]

Hi Larry,
Welcome to the bords
Love Sarahxxx

 

[Gribur]

Wow, you guys are really helping , Little more info for you.

Wow, you guys are really helping , Little more info for you.

I just wanted to say thanks so far for all of the replies. I had been seeing the same cardiologist from the age of 8 months until last year, mok doc lee in London ontario, i guess he is regarded as a genius but is old school. The doc i went to see at the latest appt was Dr. Samuel Siu chief of cardiology for the city of London and previously was in Toronto. They will be testing for info on Replacement of my aortic stenosis and possibly the ascending aorta. He recommends pulmonary function tests , a carotid ultrasound to rule out any carotid disease and a CT scan to rule out coronary obstruction and evaluate the ascending aorta and make sure there is no coarctation or abnormalities of the subclavian. He said that after results from upcoming tests he will determine who the best surgeon is for my case and where the surgery will be, either in Toronto or London. I am not sure which has the most capabilities but I guess he will know best. I was emailed a lot more numbers (might as well be Japanese) as I have no clue what they mean. I will post them following this and maybe somebody fluent in Cardiolonese can maybe do some translation. Take care everyone and Talk soon, here are the numbers and info, which I am sure if you were to reposition properly could be used to calculate the trajectory of a rocket to the moon.
Larry


Interpretation Summary
There is mild concentric left ventricular hypertrophy.
Left ventricular systolic function is normal.
Severe valvular aortic stenosis.
Mild to moderate aortic regurgitation.
Mild dilatation of the ascending aorta.
No Doppler or imaging evidence of an aortic coarctation.
Left Ventricle
The left ventricle is normal in size. There is mild concentric left ventricular hypertrophy. Left ventricular
systolic function is normal. Ejection Fraction = 60-65%. Diastolic function is normal. No regional wall motion
abnormalities noted.
Right Ventricle
The right ventricle is normal in size and function.
Atria
The left atrial size is normal. Right atrial size is normal. The interatrial septum is intact with no evidence for
an atrial septal defect.
Mitral Valve
Lawrence Griffin 2012-04-24
http://lhscxcelara/getReport.asp?St...3619.2.239.2732.1335255492.0.1201&modality=us[2012/04/30 1:22:32 PM]
The mitral valve is normal in structure and function. There is no mitral valve stenosis. There is mild mitral
regurgitation.
Tricuspid Valve
The tricuspid valve is normal in structure and function. Insufficient TR doppler signal to estimate RVSP.
There is trace tricuspid regurgitation.
Aortic Valve
The aortic valve is bicuspid. Thickened aortic cusps. Calcified aortic cusps. Severe valvular aortic stenosis.
Mild to moderate aortic regurgitation.
Pulmonic Valve
The pulmonic valve is normal in structure and function. Trace pulmonic valvular regurgitation.
Great Vessels
The aortic root is normal size. Mild dilatation of the ascending aorta. No Doppler or imaging evidence of an
aortic coarctation.
Pericardium/Pleural
There is no pericardial effusion.
Cardiac Rhythm
The baseline ECG displays normal sinus rhythm.
MMode/2D Measurements & Calculations
IVSd: 1.2 cm
LVIDd: 4.9 cm
LVIDs: 2.7 cm
LVPWd: 1.2 cm
LV mass(C)d: 229.9 grams
LV mass(C)dI: 119.0 grams/m2
Ao root diam: 2.9 cm
LA dimension: 3.2 cm
asc Aorta Diam: 3.8 cm
LVOT diam: 2.3 cm
EDV(MOD-sp4): 176.9 ml
ESV(MOD-sp4): 57.6 ml
EF(MOD-sp4): 67.4 %
EDV(MOD-sp2): 142.6 ml
ESV(MOD-sp2): 69.4 ml
EDV(MOD-bp): 161.2 ml
EF(MOD-bp): 59.6 %
SV(sp4-el): 122.8 ml
Doppler Measurements & Calculations
MV E max vel: 81.6 cm/sec
MV E/A: 1.8
Ao V2 max: 595.3 cm/sec
Ao max PG: 141.8 mmHg
Ao V2 mean: 407.4 cm/sec
Lawrence Griffin 2012-04-24
http://lhscxcelara/getReport.asp?St...3619.2.239.2732.1335255492.0.1201&modality=us[2012/04/30 1:22:32 PM]
Ao mean PG: 75.8 mmHg
Ao V2 VTI: 143.1 cm
AVA(I,D): 0.79 cm2
AVA(V,D): 0.71 cm2
AI max vel: 436.6 cm/sec
AI max PG: 76.3 mmHg
AI dec slope: 253.4 cm/sec2
AI P1/2t: 504.6 msec
LV V1 max PG: 3.9 mmHg
LV V1 mean PG: 2.5 mmHg
LV V1 max: 98.5 cm/sec
LV V1 mean: 74.8 cm/sec
LV V1 VTI: 26.3 cm
SV(LVOT): 113.1 ml
Reading Physician:
Dr. Samuel Siu on 2012-04-24 06:48 PM
Ordering Physician: Siu,S.
Referring Physician: Li,Mok-Dok; Emond,M.

 

[karla]

I think the thoughts given that if you were in immediate danger you would have been referred for immediate surgery are on target.
My test results had been deteriorating (echo, etc every 6 months) so I knew it was jsut a matter of time before surgery was coming but then I developed symptoms. I had a new set of tests, including a cath, and the cardio wanted to get a surgeon down to talk to me while I was still on the table. I asked if I was in immediate danger and needed the surgery right then and there because i really wanted to go to a larger center where they did AVRs in their sleep. If he had said "yes, you need it now", no question I would have had it done there as soon as it could be arranged. He told me he thought I needed surgery in the next month or so and he would get an appt with the surgeon I wanted within the next week....and he did. The surgeon didn't think things were quite so urgent and there was time for dental clearance, a CT, etc. Bottom line - surgery was done within about 6 weeks.
I did have fears that something would happen before the surgery. The things that kept me sane were going to work up until the day before surgery and keeping very, very busy (non-physical busy) in the evenings.
Now, about 8 weeks out, it has been YEARS since I felt as good as I do now. I think I was having subtle symptoms for a long, long time that I attributed to anything and everything except my heart.
This period is definitely the hardest to get through. Do whatever it takes to get your mind off things as best you can and know that our problems are pretty common and the docs are quite familiar with them. They even know, in general, how long it takes for the valve area to decrease.
Also - the docs aren't going to do anything that is going to get them sued. If your doc thought you were in immediate danger, he would take prompt action.
Hang in there!!

 

[Gribur]

The Days

The Days

Wow, yesterday felt alright, today , not so much. I have been looking at my numbers and comparing to results on google and worrying about aneurisms and feeling deppressed and thinking of my soon to be wife and kids and just annoying the hell out of myself lol. I just need to make it to surgery, live through surgery and then be in the percentage that get through recovery and live another 50 years. Wow, not too much to dwell on. Anyways, anybody who feels compelled to look at the numbersd i posted and comment on your thoughts using your knowledge please do. I hate not making the choice, and having to do things, I do not like this scenerio at all.
Huge vent guys, sorry
Larry

 

[ElectLive]

I have been looking at my numbers and comparing to results on google and worrying about aneurisms and feeling deppressed...

The prospect of an aneurysm can be scary, no doubt, but your aorta measurement is not. For reference, 5.5 cm used to be the surgical threshold, then it became 5.0 cm for bicuspid patients, and now is usually between 4.5 and 5.0 cm, depending on certain factors. Your measurement is 3.9 cm. Most importantly, it is detected and is "ok" - not severe yet, still below the current surgical threshold. Now, your valve needs replacement, though, so your surgeon may do aorta work at the same time to prevent future problems. But your aorta is not in a desperate state of emergency.

Maybe you could take a break from google and just ask some more questions here.

 

[Greg a]

Larry as I said in the other thread I'll meet you in Woodstock for lunch anytime